Sunday, November 14, 2010

Sadie's fundraising story

I had a perfectly normal pregnancy, my birth was even pretty average...although long. But when my baby, Sadie, was born, she wasn't breathing. There was meconium covering her body and in her nail beds, it had obviously been there a long time. She had been sick, and we didn't know it.

She was immediately rushed to the hospital (we had a home birth), where an experienced doctor quickly discovered signs of brain damage. Sadie was transferred then to Phoenix Children's Hospital's NICU, one of only two Neuro-NICUs in the country. There, Sadie was put on brain cooling.

When babies are born and not breathing, brain damage can set in pretty quickly. But, if their body temperature can be cooled down to a hypothermic state, they've found that they can stop the damage from continuing, and even reverse it. But when Sadie wasn't showing improvement the way other babies have, the doctors did some more investigating.

Group B Strep was found in my placenta and the consensus was that the infection, although it didn't reach her, damaged her brain through contact with neuro-toxins. She had been very sick inside my belly and nobody knew. This is probably the stress that caused her to pass the meconium, which she must have aspirated, which was the cause of her not breathing when she was born.

What we were told at the hospital was very grim. We were told that brain cooling could not reverse Group B Strep damage. She couldn't suck, she was having trouble breathing independently, her eyes were barely open...and they told us she'd always be that way. A vegetable, they called her. So, we made the decision to unplug the breathing tube and see what happened. We were all prepared to say goodbye, all of us but Sadie, that is.

Fortunately, the damage to her brain that caused the breathing, swallowing, and alertness issues happened to be the hypoxic event (lack of oxygen), and in that respect, the brain cooling saved her life. When we unplugged her, she started to wake up, she continued to breathe on her own, and she started to swallow. Sadie was the 47th baby to be cooled in the Neuro-NICU at Phoenix Children's Hospital. And to this day, the doctors are amazed that she is still alive.

We were only in the NICU a week, but since we've been home, we've come up against a number of other obstacles. We fought to get into the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital because we believed Sadie was NOT having seizures, and refused to medicate our baby unneccessarily. We had an MRI when Sadie was 6 months old. And we visit a special needs clinic at the hospital where we see Dr. Wendy, Sadie's pediatrician. We've also needed and used the Emergency Room there. Phoenix Children's Hospital is an amazing place, full of wonderful and caring people.

Sadie is the most amazing screamy ball of cry that has ever happened to us. She has since been diagnosed with Cerebral Palsy, Cortical Visual Impairment, and Microcephaly, and she still carries the Epilepsy diagnosis even though, for now, she is seizure free. But she is alive, and she's the cutest little thing, full of spunk and spitfire. She is strong and determined. Even though coming home on a feeding tube, she learned how to breastfeed. She is now eating solid foods with fervor. And she knows what she wants, whether it be to nurse, to bounce, to sit, or to go for a walk in her stroller.

None of this would have been possible without Phoenix Children's Hospital (which I could barely find that first time, but now I can drive to with my eyes closed!), and our story is just one in thousands just like it. We are so grateful for everything they've done for us, we can only hope that the little we can do to help them raise money will help other families like ours in the future.

I am training (and it is NOT easy) to run 13.1 miles, a half marathon, to raise money for Phoenix Children's Hospital, and I'd really love for you to help by giving. Anything will be appreciated, every dollar is important. And to encourage you, I am holding a raffle for ONE MORE WEEK. On Sunday, November 21, I will be drawing a winner for a quilt, handmade by my mom, from the names of the donors to my fundraiser. For every $5 you give, you will receive one entry into the raffle (that means $25 is 5 entries, etc). Please consider helping, by donating to this wonderful hospital, where babies and children's lives are saved everyday.

You can donate by clicking here.

1 comment:

  1. I don't recall how I found your blog but its great! I have a little one with special needs as well. Best of luck to you with your fundraising goal!!